Stockout of Depo-Testosterone is life threatening

A months’-long national shortage of an affordable masculinising hormone has not just adversely affected the health of a number of transgender men but has revealed worrying levels of disregard for the general well-being of a sector of the population already carrying an unusually heavy load of discrimination, stigma and even violence. KARIN SCHIMKE reports.

Depo-Testosterone, an affordable injectable hormone used by cisgender men with testosterone deficiencies, transgender men undergoing gender affirming treatment and non-binary people, has been out of stock in South Africa for more than three months. The shortage has been described as life-threatening.

“When we say life-threatening, we are referring to the fact that suicidality among transgender people is extremely high,” says psychologist and transgender man Elliott Kotze. “Gender dysphoria is extremely unsettling to live with and hormones are the key to translating your body so that others can read it the way it really is. We’re pretty frantic and desperate. This is an emergency for us, but no one except we seem to see it that way.”

GenderDynamiX health advocacy officer Linda Zakiyya Chamane explains that because the medication is chronic, physical manifestations of ceasing to take it are immediately felt, and all these pose not only serious physical health risks, but also have an impact on the mental health.

Lwazi Mbokazi, from KwaZulu-Natal, says he recently phoned his pharmacy to get an update on a restock of T, as the hormone is generally called. “They couldn’t give me date because they are having issues with their supplier. The mentioned middle of March. Nobody has given us a valid reason behind the supplier complications and, we weren’t forewarned in the first place, which is unethical.”

Mbokazi, like many of the trans men Spotlight spoke to, has helplessly had to watch his health decline.

“I’ve been off testosterone for nearly two months now and I have been experiencing severe depressive episodes that make it difficult for me to perform simple task, because of the fatigue and moodiness caused by low T levels. I haven’t been able to sleep much, and I wake up with anxiety every morning, because my hormones are all over the place. But I am relieved that my menses haven’t returned.”

It became clear to users of the injectable Depo-testosterone by February that it was difficult to have their prescriptions filled, though some report that their difficulties began in November last year.

Communication from the suppliers, Pfizer, around the reasons for the stock-out has been terse. It has emerged that a letter was sent by a junior brand manager at Pfizer Laboratories to health care professionals on 3 December 2018, stating that “we continue to experience an out-of-stock situation of Depo-Testosterone 100mg INJ 10ml […] We wish to assure to assure you that every effort is being made to resolve this situation as quickly as possible. We apologise for the inconvenience that this situation may cause you, your customers and/or patients.”

It appears that this message didn’t filter through until the stock-out became evident to users early in February, at which point Pfizer said in a short statement that stocks would be replenished by the end of that month. Two weeks later, as trans men around the country scrabbled around desperately trying to find stock, Pfizer released another short statement, saying that the interruption was out of their control.

Charmaine Motloung, the communications and media manager, said in a statement: “Pfizer recognizes the importance of the consistent availability of Depo-Testosterone … and actively worked with the Regulatory Authority to minimize the impact of the shortage on our customers and patients.”

Portia Nkambule, acting chief executive officer of the South African Health Products Regulatory Authority (SAHPRA), responded to a media query about whether the stock-out was the result of a hold-up in the issuing of permits, saying that “the issuing of permit by SAHPRA was sub-optimal between November 2018 and January 2019. This was partly caused by the migration of SAHPRA office to new premises.”

SAHPRA has recently undergone restructuring. It used to be known as the Medicines Control Council.

She said the internal matter of permit issuing had been resolved in February.

Transgender activist, author and general practitioner Dr Anastacia Tomson said not having the permits issued might be valid as an excuse for a period of time but bringing drugs into a country was an operation that had hold-ups all along the way, from lead times, to shipping, to customs to import duties.

“Drug companies know that they can expect delays along the way and there are usually reserves and surplus. You don’t start ordering a widely used drug when the last stock runs out. This problem must have been coming for a while and one cannot help but think that poor planning is an issue here.”

Depo-Testosterone is used by transgender men as a chronic medication, but it is also used by cisgender men with testosterone deficiencies. Demand for hormones is growing exponentially as more and more trans people come out. Canada and France recently experience hormone stock-outs, and Italy is currently also experiencing one. Last year, the feminizing hormone Premarin was unavailable to trans women in South Africa for several months.

“The amounts world-wide don’t seem adequate, especially if you consider how many people who need it don’t even have access to the hormones for a variety of reasons,” says Dr Tomson.

The stock-out, which has caused enormous distress, was widely discussed on social media, with users asking for tips on who might still have stock. Cisgender men who had extra vials of the hormone were offering their supplies to desperate transgender men.

Some people, like Germaine Gabriel de Larch, decided to try black-market hormones, because the only other masculinising hormone available, Nebido, is expensive in comparison to Depo-Testosterone.

“I had to go on to a black-market testosterone as it is the only one I can afford. I have been experiencing exhaustion, nausea, severe light-headedness and dissociation. These symptoms became too unbearable after just two shots and I stopped taking that testosterone a week ago,” they said.

“I’m feeling desperate in medical terms as I struggle with mental health issues. Keeping my body hormonally balanced is essential for my mental health. I also worry about the physical effects of low testosterone, which include exhaustion, insomnia and reduced bone mass. Then there are the symptoms which worry me in terms of my gender dysphoria: loss of muscle mass, redistribution of fat to hips and thighs, and the worst, the return of my period, all things that make me extremely uncomfortable and affect my mental health.

“Once you’ve experienced the relief of the masculinising effects of testosterone and the relief and sense of confidence that that brings, the thought of the loss of these effects is terrifying. Emotionally, I’m feeling despondent, overwhelmed and anxious.”

The stock-out, with its own particular set of frustrations about the lack of communication and the fall-out for individual physical and mental health, has thrown a stark light on much larger issues facing — by some estimations — around one in 200 of our fellow citizens.

De Larch says. “I’m feeling despondent, anxious and let-down by a system that is supposed to provide us with the human right of access to healthcare. The lack of response to this healthcare crisis points to a lack of concern and a lack of awareness of the magnitude of this issue for the trans, non-binary and intersex community.

“What needs to change is the medical and healthcare sectors being more serious about providing healthcare to these minority communities, and being more understanding of how this stockout and the larger apathy towards the concerns of the trans community needs to be analysed in order to cater to the health issues of trans people.

“This lack of understanding and apathy is based on the misapprehension that trans healthcare is elective, rather than a chronic healthcare condition.”

Mbokazi says: “The way the relevant parties have failed to immediately act to resolve the issues around the stock-out has made me realise that trans healthcare isn’t taken seriously in this country. Or anywhere else for that matter. I don’t know if it’s because of underlying transphobia, but the healthcare system doesn’t have any preventative policies or measures in place that could compensate trans people during emergencies like this.”